Concerned about care home resident's worsening memory and recent cough

[PerkyOchrePeer]

I know a lady with dementia in a care home. Igave visited her but havent had time lately. Yesterday to ask how she was , and they said she was doing well , but had a nasty cough , so they got the doctor to see her.And the doctors said she was ok. Then I spoke to the lady and remarked on this doctor's visit and she said, no doctor had been to see her, which is quite alarming. Because this means she is getting worse. Because she cannot seem to remember what happened a few hours earlier.. i then notified to care home and they said they would get the doctor to test her memory again.. This means that she is not as fine as they said.She was so wide they say she was , I m very concerned

Please also consider that not visiting as frequently as you think is needed may not be because they don't give a toss. It is extremely distressing to see someone you love deteriorate like this and it can be very tough for family who knew them throughout their life to deal with.

The fact the sister is struggling to make decisions is an indicator of this. But in all honesty, what is there for the sister to decide on? The person with dementia is being cared for appropriately.

"What's the use of being next of kin and knowing her sisters dementia is declining and not treating it as urgent."

But what is urgent about that? What are you expecting them to do?

It was the same day that she saw the doctor when I rang the home

My mum phoned me one lunchtime and I told her I was coming up later to take her to Tesco. By the time I arrived she'd forgotten that I was coming and even that she'd phoned. That's what's normal and "fine" with dementia. That's why people don't understand why you think it's a problem

I really don't understand your issue, OP. What action do you think should be taken in response to this lady's declining memory? You've mentioned getting her memory assessed again by a doctor, but what exactly would that achieve and how would it help?

You seem really concerned by the fact that she didn't remember seeing the doctor. What exactly is your concern in relation to this? Do you think that the home is lying and that the doctor didn't attend? Or are you concerned about the fact that she couldn't remember it? It seems extremely normal to me that someone with dementia might forget about this, and I don't understand what it is that is worrying you.

So what, though?

I am sorry, that must have been a shock for you to see your friend had declined so much since your last visit. As others have said, it is unfortunately very normal with dementia to progress like this and it’s wonderful that she is in a care home where they can look after her. You are a kind friend to be concerned about her and I am sure she enjoys your visits - my DF remembers very little but is always pleased to have visitors.

Please don’t judge her relatives too harshly if they don’t visit often, my DMs dementia presents differently and she is often angry and upset when she was never like that before. It’s not an easy gig and truthfully I probably wouldn’t visit as often as I do if I didn’t know DF got a lot from it.

OP when they say she’s doing fine, it’s likely they mean things like she’s eating ok, she’s not in distress, that physically she’s ok despite the cough.

They don’t have the time or resources to monitor her level of forgetting, which may change day to day.

Sadly the memory deteriorating is normal for dementia and the doctor assessing her will not help in itself. So long as the staff are caring and watchful it sounds ok, just sad.

@PerkyOchrePeer Your response still doesn’t make a lot of sense.

The reason was because I felt the home were not being honest with me about how she was. When I asked how she was they said she was fine and that she had seen the doctor. On that basis I asked her how she was and that I was told she had seen the doctor but she didn't remember the doctor seeing her. This means she is not fine.

There’s nothing there to indicate she is NOT fine. She had a physical issue which has been seen by a Dr. Her not remembering the Dr has seen her does not mean she is not fine, it means she has dementia. The dementia is not new, she has already been diagnosed and it only goes in one direction. Based on this there is nothing to indicate the home was not being honest.

I realised she was getting worse a d told the sister she should get the doctor to assess her again her sister said oh I hadn't thought of that I will sort that out. A month later she still had not sorted it out because she had been busy. What's the use of being next of kin and knowing her sisters dementia is declining and not treating it as urgent

What urgent treatment are you proposing? I’m baffled. She has dementia, it is declining, as is the natural expected progression. What urgent treatment do you believe she should be having or how are you proposing to treat dementia decline as urgent?

The stuff about the sister has no relevance, there is nothing she can do about dementia progressing as expected. That’s not going to change if she visits or doesn’t visit.

Why do you think that a progression in her dementia should be treated urgently? It’s completely normal for dementia to progress, it generally wouldn’t be treated as a medical emergency. What action do you feel they should be taking?

There is no urgent treatment that can prevent or reverse the progression of dementia. As long as she is physically ok, eating and drinking and being kept comfortable, the care home are managing her needs. Why do you feel they owe you any explanation?

I don’t think you understand dementia very well. My parent (in their early 70’s) has early stage dementia and can ask me the same question repeatedly over the course of 20 mins. They also forget pretty major life events until I remind them. Dementia symptoms fluctuate, daily, even hourly or by the minute.

even if she is ‘getting worse’ there’s nothing that can be done to stop it. Is she on Memantine?

I hope you corrected them by informing them you're not actually this ladies sister?
This is a very strange post. The staff are under no obligation to be giving out medical details to anyone but family. You are a mere visitor, an occasional visitor at that.
She is clearly and sadly going to decline, she has dementia, which leads to other health conditions, as things decline.
But she is in the best place to be cared for. Just be a visitor to your friend and leave the staff to do their job.

I remember when my dear grandma was in a nursing home and there was a regular "visitor" to the home, who inveigled herself into other residents business. Completely ignoring the person she was actually visiting.
She was not being all lovely and helpful, she was nothing more than a busybody. No doubt gathering gossip so that she could go back and tell her friends over coffee about the people she "visited", how terrible their health conditions were, what the staff "told" her or how awful the staff were to visitors! Staff in nursing homes can spot a busybody a mile off. I've worked in nursing/residential care homes, I have personal experience!

Yeah, you don't understand dementia. It is a one way street. This woman is clearly far enough down the road to be in a care home.

When the care home said this woman was "fine", they meant that she was being treated appropriately for her cough by the GP and was content and otherwise well. You do not get better from dementia. The care home were obviously not seeing a rapid deterioration which could indicate something other than dementia such as a UTI.

If a care home rang relatives every time someone with dementia couldn't remember something they'd never be off the phone.

You do know that there’s no cure for dementia, don’t you? Not understanding why you see the normal course of deterioration in these cases as requiring urgent action. What are you expecting her carers to actually do?

That's what dementia does, it stops people forming short term memories, accessing them or both, amongst many other symptoms. So today, yesterday, a few days ago doesn't really change the fact that your friend hasn't been able to store or access that memory if they did.

As PPS have said, you don't appear to understand dementia, this is a fully expected development of dementia and isn't urgent nor can it be treated or reversed, it's a progressive illness with no cure, and depending on the type of dementia it can be a slow or gradual decline or in 'steps', or it can fluctuate. It's about management at this stage, memories of an event may not be stored or not be accessed but the emotion from that event stays, so a visit or conversation with a friend or relative may be forgotten but the good feeling it created will stay, that's why being calm, explaining things simply but not being patronising and not trying to prompt memories is important, people with dementia live in the moment.
Looking up and reading some resources may help you know what to expect and allay some of your worries.

They mean that she is ‘fine’ within her parameters of her condition. She isn’t ’fine’ by the standards of someone who is healthy and living independently. She IS ‘fine’ by the standards of someone who is in a care home and has dementia.

She has seen the doctor for her cough, which obviously wasn’t serious enough for more intervention (so that’s good).

She forgot she’d seen the doctor, which would be concerning if she didn’t have dementia. But she does have dementia, therefore it is completely normal and expected for her to she forget a lot of things, and there is nothing wrong that you didn’t know about already.

When they say she is ‘fine’ they mean she is as well as could be expected for a person in a care home with dementia, and there is nothing unusual or unexpected that is wrong.

I think most people would understand that. But your posts in general suggest that you are very literal-minded and you struggle to grasp anything that isn’t extremely black and white. Or you define something in a certain way and then refuse to accept that other people might have a different interpretation.

And of course her dementia isn’t seen as urgent - there isn’t any cure so there is nothing to be done. They can’t do anything to stop it progressing. It will get worse and worse. That is what dementia is. There’s nothing her care home can do about it. You need to accept that it is normal and expected that a dementia patient will become more and more forgetful and that this is just what her condition is. There are no surprises or additional concerns here.

This! She is fine for the care homes standards. She will decline, that is normal, they know this is normal, so it is not something other than fine to them.

I think you need to understand that ‘fine’ means no imminent threat to life rather than ‘perfectly healthy’ when you are talking about someone with a progressive terminal illness.

We've lost family to dementia too. It's so hard to watch I'm sorry you're experiencing it now. It doesn't sound alarming, what you described, it sounds like she forgot.